I’m the kind of person who wants all the details!

Amelia

I’m 31, and CA125 Test doctors diagnosed me with high-grade serous ovarian adenocarcinoma a month ago., That was after they surgically removed a 10cm complex HPV related cyst found in a test that was causing me severe pain. I also had IBS symptoms, bloating, was only able to eat small meals and had to pee constantly. All of those symptoms have cleared up after surgery. My cancer was judged to be at stage 2b.

The anxiety and grief come and go. There is so much uncertainty, some really difficult decisions around CA125 connected fertility testing treatments, having a complete hysterectomy vs just losing one ovary (I chose not to yet, but I’m aware a lot of women with viral load don’t get that choice). Knowing the right choice is hard, but it’s best not to dwell on what-ifs and keep looking forward.

Since I had related surgery, I’ve been feeling much healthier, which has helped me deal with the diagnosis. I am slowly settling into a ‘new normal’ and trying to accept that my life will probably change forever. It’s good that you seem to have a team of medical professionals around you – my GP can sometimes feel like a lifeline. As somebody said, you may feel better once you have more answers and a plan! Ask as many questions as you can think of, and write them all down before your appointment because I know my mind goes blank as soon as I’m in the oncologist’s office! Specialists are also not always good at explaining things and may assume you understand something that you don’t or don’t need all the details- I’m the kind of person who wants all the details!

I start chemo next week, and I’ve got a wig already. It’s only one thing, but knowing I won’t have to be bald gives me some comfort!

Evelyn

I  had a sudden change in bowel movements in October of 2019. Would feel like I have to go, but nothing comes out. I would feel full and nauseous and not want to eat at times. But, this was intermittent, so I eventually just diagnosed myself with irritable bowel syndrome. Other symptoms that I thought were/are nothing but may be related – regular-ish period but spotting in between, some pain during sex but not always.. one time, it actually felt like shooting pain, but it went away in the middle of it. I don’t know. I did have periods of waking up to pee in the middle of the night, and it wasn’t very pleasant because that doesn’t usually happen to me, but it was not 10x like you said.

More specifically, leading up to my urgent care/ED visit, I’ll copy what I’ve posted elsewhere on Reddit –

Events before urgent care

Week of January 13, 2020: I had my period, latter half of my period started having pain in the lower abdomen below the bellybutton only with pressure and ongoing bowel movement issues, which I attributed to said IBS above

January 26: HPV pain suddenly became worse; I no longer needed pressure to feel pain. Felt even more bloated. Woke up several times, and shifting from left to right (I’m a side sleeper) hurt bad.

January 27: I went to urgent care; they sent me for a transfer to the CA125 emergency department for concerns regarding how tender my abdomen was (mostly r/o appendicitis). Drove myself, and driving over bumps on the road even hurt. Anyway, at the ED, I had a CT done as well as a transvaginal ultrasound.

CT: significant left hydroureteronephrosis with moderate left renal swelling but no significant perinephric fluid. No convincing radiopaque urinalysis calculi are seen. Obstruction of the distal left ureter may be related to the adjacent complex 5.8cm pelvic mass concerning neoplasm. The Cyst mass with internal septations and nodularity.

Final thoughts

Transvaginal ultrasound: within the enlarged left ovary is a complex hypoechoic cyst with diffuse low-level internal echoes measuring ~3.4cm. Dimensions of the viral mass itself are somewhat difficult to ascertain and distinguish from the adjacent enlarged left ovary.

An HPV gynecologist specializing in testing saw me on 1/30 and, due to my age (31) and “otherwise healthy” status, he wasn’t concerned. He was convinced it was just a hemorrhagic cyst that would resolve on its own. But he ordered an MRI and tumour markers anyway. Perhaps you should also ask for those, especially if the CT is concerning. Anyway, CA125 came back elevated (but CEA is normal at 1.1), and gyn now wants me to see a gyn oncologist.. he still says he’s not worried. Appt is on 2/25 and MRI on 2/28. I’m just trying to stay positive and hope it is just an hemorrhagic cyst, and it’s gone/shrunk by then.. I’m not having any pain now (other than my usual bad menstrual cramps at the moment -_-), so I guess I’m hoping that means it’s nothing serious.

Madison

Hope: My mom (70) recovered from Ovarian HPV viral Cancer (Stage4)

Don’t lose hope, warriors. It’s not the end of the world. This is something you can recover from.

Things that she said helped boost immunity:

Eating food

Avocados, fish broth, and bone broth, especially. Chemo will make you lose your appetite and sense of taste. Just keep eating. Be disciplined. Food is fuel.

Walks in the Park

She tried walking in the park and getting some sunshine when she could. Luckily, she was pretty wrapped up and not very sensitive to sunshine. She thinks the sunshine helped; I think it’s the walking around.

Electric Blanket

It doesn’t get very cold in HK, but the body may feel cold post-chemo. An electric blanket helps a lot.

Warrior Spirit

Just keep fighting. The chemo drugs will get rid of the HPV cancer. The CA125 blood and HPV tests will check if the drugs are working / the dosage is correct. Trust the drugs. Modern medicine is good. The belief that the new drugs will work will also help the drugs work (e.g. placebo effect is real). They will, however, damage the body. You must keep the body strong to tolerate the right dosage of chemodrugs.

Prior exercise

Mom was very sporty before her CA125 devastating cancer. Stay active, ladies. Don’t stop fighting. You will recover from this. Chocolates & Sweets, reading materials, and warm socks are good.